We got our results from the visit to the DAN! doc who we started seeing through Pfeiffer Treatment Center (I wrote about our first visit earlier). They were very interesting and supported the fact that there are a couple of areas out of balance.

THE RESULTS
First of all, his kryptopyrroles were quite high and his zinc levels were below the normal range, indicating the presence of pyroluria as suspected. His zinc/copper ratio and the amount of unbound copper were both somewhat high, and the amount of copper-binding protein was lower than normal.

A couple of things I wasn’t expecting to hear were that his vitamin D level is deficient and that his histamine level is elevated. He also had low ferritin, indicating that his iron stores are low, which isn’t so surprising given his diet.

The organic acids test showed insignificant amounts of yeast and normal bacteria, although he did have a somewhat high arabinose level. And finally, the X-ray showed mild to moderate fecal retention.

THE PLAN
So, we have started the compounded supplements along with a variety of other items that were recommended by the doctor. We haven’t gotten to the full plan yet, but most everything has been started. Here’s a breakdown of what we are giving:

With breakfast

• Compounded supplement including Vitamin C, B6, P5P, Biotin, Niacinamide, Chromium Polynicotinate, Magnesium Glycinate, Zinc Citrate and Vitamn D
• Inositol and Taurine (for calming and aggression)
• Zeolite (which we have been using for several months for detox)
• L-Carnitine (for motility)
• Probiotics

With supper

• Compounded supplement including Vitamin C, Vitamin E, Biotin, Niacinamide, Chromium Polynicotinate, Magnesium Glycinate, Zinc Picolinate, Iron Gluconate and Vitamn D
• Inositol and Taurine
• Zeolite
• L-Carnitine
• Probiotics

At bedtime:

• Melatonin

We were using GABA for calming but the nurse had us discontinue it since we were seeing any changes. That is when we introduced the inositol and taurine. I can’t say that I have seen a difference, but they are both safe and helpful in other ways, so I’m going to give them some more time.

STILL TO BE ADDED
We still need to add cod liver oil to the regimen. My husband has actually been taking the CLO that I had. When I ordered more, I tried a different brand and he remarked on how much better it tasted. When I looked at the bottle, I realized that it was just fish oil with the essential fatty acids and no vitamin A or D, so that’s probably why it tastes so good! I need to order the regular CLO and then start giving that to Michael.

I also have a calcium/magnesium liquid that he is supposed to take, along with a third dose of L-carnitine, at bedtime, but he hates it due to the creamy texture. We are also supposed to do a bowel massage each night to help with motility.

The other thing that I did faithfully at the beginning and have slacked off on is applying Evening Primrose Oil to his skin at bedtime. This is an omega 6 which has been shown to be helpful in treating pyroluria, along with the high doses of B6 and zinc.

Related Posts:

• Our First Visit to Pfeiffer Treatment Center
• To-Do Tuesday with Biomed Update
• Solving Our Sleep Problems, Part II
• Autism Resources: Biomedical Intervention
• Sunday Best

What a week! I received my son’s IEP on Tuesday (we met the previous Thursday) and unfortunately there are still some outstanding questions, at least on my end, that need to be resolved. So I had to send back the NOREP (written notice form) requesting another meeting.

Here are a few of the notable posts I found this week:

Decision Points at TherExtras – a fascinating and thought-provoking play by play of a therapy session from the therapist’s point of view

It’s Summer Camp Time Again…HELP! at Spirit of Autism – I can’t find a permalink to the post, but, if you scroll down, it is from April 17th and has a great list of questions to ask when evaluating a summer camp for your child with special needs

Turns out Autism IS associated with GI disorders at Adventures in Autism – results from an Autism Treatment Network study that were recently published

Happy Mother’s Day to all of you special moms out there!

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• Our Seesaw Summer
• Go Ahead, Click On It

I’ve been too busy with a psychiatric evaluation and an annual IEP meeting to keep up with email, let alone blog, but there have still been a number of great articles that caught my eye this week.

My Crystal Ball and My Checkmark Chart at Welcome to Normal – My last token economy system for home had kind of fallen by the wayside with the recent difficulties in school, especially since I wasn’t letting him play the Wii or computer if he was aggressive that day. It kind of makes it hard to earn privileges at home when you aren’t allowed to redeem them.

But after reading this and seeing how Caitlin is converting the checkmarks to money, I thought that might work for Michael at this point in time. I am making them equal to a dime, which is the same amount he gets at school (although theirs go towards school dollars and not real ones, of course!). Michael has been highly motivated by it for the last few days, so hopefully that will continue.

Interview With Taylor Morris — An Exceptional Teenage Girl with Aspergers at Hartley’s Life with 3 Boys – A fascinating interview with a young lady who shares about her experiences with sensory processing disorder and Aspergers.

In Honor of Dr. Stanley Greenspan at 5 Minutes for Special Needs – Dr. Greenspan, who among many other things started the D.I.R./Floortime therapy, died on April 27th following a stroke. He will be greatly missed.

Eating for Autism at autism community – This is a review of a book by Elizabeth Strickland regarding the GFCF Diet and having a healthier diet overall. I’m wondering if any of you have read or used this book at all and whether you like it. One of the things I need to focus on with Michael is improving the quality of his diet, which has been difficult due to his sensory issues and the number of different foods and textures that he avoids.

Well, that’s is for this week. I’m clearing out the GReader and starting fresh in the morning!

Related Posts:

• Autism Resources: DIR & RDI (Huh??)
• Dr. Oz on Autism, Brain Inflammation and Dietary Intervention
• Nourishing Hope Book Giveaway Winner
• Nourishing Hope for Autism: A Review and Giveaway
• Asperger’s Syndrome Awareness Blog

I have been reading so many great posts by bloggers lately, and whenever I see something that really speaks to me in some way, I feel an urge to share it. Rather than flood Twitter or Facebook with links that may or may not be seen by anyone, I decided to list a few of them here.

So here are some things that caught my eye in the past week:

On Advocacy – a subject that is near and dear to my heart:
What Is Advocacy? An Inside Scoop From Pathfinders For Autism from The Gift: A Blog for Caregivers of Sensational Children

An Amazing Moment When a Kid is Just a Kid
The Power of You and I from Welcome to Normal, Population 0

Insights Regarding the Division Between Biomed Moms and Neurodiversity
Desperate, huh? and Bridging the Gulf from Life as the mother of 4

Practical Tips
Simple Accommodations to Help Your Autistic Employee Excel from Spectrum Siblings

Autism Treatment – How to Use Supplements to Treat Autism, Part 1 and Part 2 from Dr. Kurt Woeller’s Autism Recovery Treatment Blog

And on a separate, somewhat superficial note, did you know that you can now put a Facebook “Like” button on your web site? It allows you to see how your Facebook friends are interacting with sites around the web. I put one on Another Piece of the Puzzle just for kicks, so feel free to pop over and “like” me (and let me know if you add one to your site)!

Related Posts:

• The Results from our Pfeiffer/DAN! Visit
• Our First Visit to Pfeiffer Treatment Center
• To-Do Tuesday with Biomed Update
• Adult Autism Services in Pennsylvania
• Asperger’s Syndrome Awareness Blog

I last posted about my son’s biomedical treatment last October, when I was fed up with the DAN! doctor we were trying to see and decided to cancel our follow-up appointment (that had been rescheduled more than once due to testing delays).

Well, since then, we were able to go to the outreach clinic held by Pfeiffer Treatment Center, which is a non-profit center specializing in treating biochemical imbalances. They are located in Warrenville, IL, but hold an outreach clinic twice a year in Annapolis, MD.

I took Michael down there on March 9th, the day after his first chair-throwing incident and the day before his 8th birthday, and I was very impressed with the whole operation. They basically take over a floor of a hotel and you see the nurse and the doctor, who is a DAN! doctor by the way, and also give a urine sample there. The blood draw was done at a LabCorp literally two blocks away.

The doctor told us that he suspected pyroluria based on Michael’s symptoms, but that we would know more once the testing was done. He gave me a starter supplement and a short list of other supplements to use until we heard back from them. He also had us do an OAT (organic acid test) to check for yeast or bacteria and get a X-ray to check for fecal retention.

Here are the supplements we started/continued after the first visit:

• Pfeiffer starter supplement (includes Vitamin C, Vitamin E, B6, Magnesium and Zinc)
• Evening Primrose Oil (we did transdermal, this oil is an Omega 6 and recommended with pyroluria)
• GABA for calming (we didn’t really see any effect from this one)
• Continue the Zeolite
• Continue probiotics once the OAT sample collected
• Continue melatonin for going to sleep
• We added L-Carnitine after the Xray showed mild to moderate fecal retention as it is supposed to help with motility

I started very slowly with the supplements, just juice at first and then mixing in a little bit at a time until I got to the dosage. He has been surprisingly compliant, for which I am very thankful. Hopefully that will continue as we start his customized plan. I’ll post more about his results later.

Related Posts:

• The Results from our Pfeiffer/DAN! Visit
• To-Do Tuesday with Biomed Update
• Dr. Oz on Autism, Brain Inflammation and Dietary Intervention
• Solving Our Sleep Problems, Part II
• Autism Resources: Biomedical Intervention

I shared recently about how I had decided to start taking Michael to see a psychologist and promised an update on how it’s been going.

One of the original things that motivated me to take him was a concern over his levels of anxiety and his self-esteem. Whenever he would get frustrated about something or be sent for a timeout, he was constantly saying things like, “Everybody thinks I’m stupid” and “Nobody likes me,” usually at the top of his voice as he stormed off to his room.

After the psychologist met with me and then talked with Michael for a while, she felt that his feelings of low self-esteem weren’t pervasive and that it was more a function of him just coming out with something drastic when he was extremely frustrated, since he didn’t really know how to handle that much emotion. And, sure enough, within a month of so, he switched from yelling about how horrible he was to how horrible WE were, as is “I hate you” and “You are the worst parent ever!”

(At this point, I am ignoring the yelling as long as he is actually on his way to his room for some alone time – which is sometimes a mom-ordered timeout and sometimes a self-imposed break.)

I took him to meet with psychologist weekly for a while, and then she suggested having him join one of her playgroups, which each have up to 4 or 5 kids all close in age/functioning level. He started going to the Kindergarten-2nd grade group and enjoyed it at first – partly because he had started being aware that he was different from the other kids at school and wanted to meet these other kids I said were out there who “thought like him.”

After a while, though, the group was ready to move into a more free-form time, where the kids would negotiate what games or activities they would do together. Michael and one of the other children were having trouble with this and still needed to focus on the challenges of actually playing together, especially with non-preferred activities. So she split the group into two and continued providing a more structured environment for the one Michael now attends.

Over the past year, he has definitely shown some progress in his ability to control his whining, continue playing a game even when he thinks he might lose (in group and at school, that is, God forbid anyone should beat him in MarioKart Wii!) and allow another child to contribute to his imaginary play. The psychologist is actually talking now about having him go back to the other group once in a while and see how he does with it.

I still occasionally make individual appointments with her to discuss specific concerns I may have and for her to work with him one-on-one. Overall, it has been an extremely rewarding experience!

Related Posts:

• People Who Think Like Me
• Dealing With Depression – Where to Start??
• Deciding to See a Psychologist
• Adopting the Older Child & Getting a Pet
• 5 Minutes for an Idea, a Giveaway, and some Rambling

Note: Since I recently republished the various articles I had written for Root & Sprout here on my blog, I decided to also share a post I had written about a year ago for Adopting the Older Child. I hope to follow this up next week with an update on how it has worked out so far.

I was recently asked by Dr. H to write for Adopting the Older Child about my decision to see a psychologist with regard to my son and am honored by the opportunity to share with you here. Although my son is not adopted, he is a child with special needs, having been diagnosed with autism shortly before his third birthday.

So what brought me to the decision to see a psychologist?

Well, over the last few years (he is almost seven now), I had pretty much given up on typical parenting books and advice because they didn’t seem to work with him. I had read extensively on the topic of autism and worked closely with all of his teachers and therapists to help him progress and to meet his needs, and we had seen some wonderful growth and development in him.

But I was starting to feel stuck. Sometimes things were great, and other times I couldn’t give the simplest direction without hearing lots of whining and arguments, often leading to total meltdowns. My son would also range from sobbing inconsolably to storming off to his room yelling that he was stupid and that nobody loved him.

I tried so many different ways of responding to him in an effort to figure out what would work, but that only seemed to create more confusion. I was also getting more and more worried about his high level of anxiety and his seemingly low self esteem. While I didn’t want to cause emotional damage, I also knew I had to get control of the situation before I had my own meltdown.

I had thought of seeking the help of a psychologist almost a year earlier but hadn’t followed up on it at the time. Now I was desperate ready, so I made an appointment with one of the people that had been recommended to me as an expert in the area of autism. She met with me alone first to discuss what I was seeing and feeling about my son and our situation, and then she started meeting with him once every week or two.

We were very lucky to find someone I really liked from the beginning, although I was willing to meet with more than one if she didn’t connect well with us. After a few months of going to her, I can say that this has been one of the best decisions I have made. My son is benefiting from having someone who can help him learn more about himself and how he relates to other people.

It has also been wonderful to have someone in our corner with more knowledge in this area to help me figure out what is going on and also suggest the best ways to handle it. She has given me several practical suggestions, including things like teaching expected behavior and finding a discipline technique that works for us.

Related Posts:

• Dealing With Depression – Where to Start??
• Knowing, and Accepting, My Limits
• Safe Crisis Plan
• An Update on the Psychologist
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Image from Wikipedia.com

Fine Motor (increase hand strength, dexterity and coordination)

• Just opening and closing the containers can be an exercise in itself
• Squeezing it to make it softer or combine pieces into a larger lump
• Pinching bits of dough and rolling small balls with the thumb and first two fingers
• Forming it into a ball or sausage with two hands or with the flat of a hand on the table
• Flattening it with a palm or a rolling pin
• Cutting it with scissors or with a knife
• Using one of the presses, such as for the spaghetti hair (even I find this one difficult!)
• Finding small objects that have been hidden in the dough

Language and Communication

• Identifying colors by name or by pointing
• Requesting what they want (more dough, another color, a specific tool)
• Answering questions about what they are doing
• Matching, sorting or making patterns with cut-out shapes or balls of different colors
• Forming it into letters and spelling words
• Drawing on flattened dough
• Expressing emotions through sculpting what they are feeling

Social/Emotional and Imaginative Play

• Sharing the dough with an adult or another peer
• Taking turns using the different tools or deciding what to make
• Creating items for pretend play, such as food for a picnic
• Being responsible with the materials (no one wants to have to get it out of the carpet!)
• Helping to clean up when playtime is all done

One issue that may arise is the child being unwilling to touch the playdough due to sensory issues. A way to get around this is be to place some of the dough in a sealed plastic bag and allow them to manipulate it without actually coming in contact with it. Over time, they may become open to touching it and eventually playing with it directly.

If your child enjoys using playdough, you can use this activity to teach almost any skill that they need help with. If your child prefers doing other things, but you want to encourage this type of play, you could use their other interests to draw them in.

The latter was the case for my own son, who loved letters and numbers but lacked the hand strength or motor planning to work with the dough. We got him interested by making the letters of his name and eventually were able to show him how to manipulate the dough himself. And now he loves playing with it and coming up with new ideas of things to make!

Please note: Most playdough is not gluten free. If your child is sensitive to gluten, you may wish to consider an alternative product or make your own. A Google search will yield several different gluten-free recipes or options to purchase. One listing I found is Gluten Free 101: Gluten free play dough brands and recipes.

Note: This article appeared originally on Root & Sprout, a parenting ezine which is no longer available online.

Related Posts:

• Magic Marker Monday: Jelly Bean Letters
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Well, I didn’t get much checked off my list this last week – too many other things kept popping up that needed to be done. After going round and round with the DAN! doctor’s office, I have decided to get copies of all the test results we haven’t met to review yet and then cancel the follow-up appointment. It is just not worth the hassles I am dealing with every single time I need insurance paperwork done properly or even to talk to someone at the office. The office manager has been very helpful, but even she can’t make up for the other frustrations I have experienced.

Now I am trying to figure out what route we are going to go. I do have Michael taking a small amount of Essential Fatty Acids as well as Melatonin at bedtime and Liquid Zeolite, which we are trying out with a few other local parents. We are going to be tracking the zeolite on a weekly basis, so I can’t add the other supplements I was holding until the organic acid test was sent in (which is now on hold anyway!).

We have a behavior plan meeting Thursday morning with the school – very excited about that – and our wraparound agency is working on getting a new TSS b/c the current one is just not up to par with what we need.

With everything going on, I think reorganizing my to do list into more of a schedule would make sense and help me to feel less like I am trying to do too many things at once. Hopefully, this will move me closer to a routine like the one that was working so well last summer.

This is where the To-Do List normally goes, but I just still haven’t really figured out how to organize my schedule. So I guess this is really just a Biomed Update!

The behavior plan meeting went well. I’ll post more about that soon. Right now, we’re super excited about going to see They Might Be Giants on Saturday for a kids’ show – although it is supposed to be yucky and rainy. My sister-in-law and her family are planning to come. Two of their girls haven’t been feeling well, so we are hoping they will be better by the weekend.

For more To-Do Tuesday, visit Crazy Adventures in Parenting.

Related Posts:

• The Brain Dump
• Our First Visit to Pfeiffer Treatment Center
• To Do Tuesday – July 21, 2009
• To-Do Tuesday – Week Eleven
• To-Do Tuesday – Week Eight

We’re in the mainstream now, baby! I just saw this clip on Age of Autism and felt like I was in the twilight zone (in a good way).

Listen to this short clip where Dr. Oz discusses inflammation of the brain as contributing to autism and how simple dietary changes can help.

Here’s a link to the Dr. Oz on Autism video if you can’t see it here.

For more information on treating children with autism through dietary changes and other biomedical interventions, visit www.autism.com.

Related Posts:

• Nourishing Hope for Autism: A Review and Giveaway
• Solving Our Sleep Problems, Part I
• Autism Resources: Special Diets (The Actual List)
• Autism Resources: Special Diets (Intro)
• Our First Visit to Pfeiffer Treatment Center